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Re: clinic visit tomorrow

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Best wishes for that trip you will be heading out on soon. take care 7 We

will pray all goes well & you all come home same day:):)

LOVE & HUGS, grandmoMBEV

clinic visit tomorrow

Hi all. Just wanted to let you know that has a regular clinic visit

tomorrow in Birmingham. To me she is doing maybe a little better than the

last time we were in clinic. She asked if we needed to pack a bag and I

said not

this time. Watch us be 4 hours from home with no bags and told to stay. Oh

well. It won't be the first time. I really don't think we will stay but

you

never know.

Just wanted to say hi and let you know about the visit.

Have a great day all.

Sue Pettit

mom to (16 wocf) driving and being the most responsible 16 yo I

have

ever seen, (13 wocf) playing football, band, and whatever else he can

get into, and (11 wcf) into all sports, running full speed doing all

she can and still doing great---diagnosed at 8 days of age at LeBonheur

Childrens Medical Center in Memphis, Tennessee, now seeing Doctor Lyrene

(and other

wonderful folks of course) at UAB Children's Hospital

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be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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Thank you so much. Apparently your prayers (and others as well) worked. We

are back home as of 7 p.m. tonight. We had an excellent clinic visit. PFT's

were 70-80 range, which is her norm now. She hadn't gained any weight

(boohoohoo) but has grown a little over 2 inches taller in the last 3 months. Oh

well, I guess maintaining weight and growing taller is okay. Anyway, the

exciting

news... is going back in December after her 12th birthday, to be

evaluated for GENE THERAPY. We are so excited. The lady we talked to,

Eubanks, said you have to have mild CF and as of right now, qualifies

for having only a mild case. That sounds so much better than the " a little

worse than mild " we heard about 6 months ago. Anyway, we really want to be a

part

of this study. Hopefully this will lead to a cure. Plus, is excited

about them paying her to come to the doctor. The study will do all of us

good in the future, plus will be followed very closely by Dr. Clancy who

is a pro at CF care and that will be very good for her I think.

Anyway, thanks again for your kind words. Once again, we are getting ready

for another round of basketball season. is very excited about playing

again this year. I am looking forward to yelling for her.

Talk to you again soon. Take care and have a great day.

Sue Pettit

mom to (16 wocf) driving and being the most responsible 16 yo I have

ever seen, (13 wocf) playing football, band, and whatever else he can

get into, and (11 wcf) into all sports, running full speed doing all

she can and still doing great---diagnosed at 8 days of age at LeBonheur

Childrens Medical Center in Memphis, Tennessee, now seeing Doctor Lyrene (and

other

wonderful folks of course) at UAB Children's Hospital

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I sure will keep everyone posted. I hope it works out well for all of us.

HAVE A GREAT DAY!!!!!

Sue Pettit

mom to (16 wocf) driving and being the most responsible 16 yo I have

ever seen, (13 wocf) playing football, band, and whatever else he can

get into, and (11 wcf) into all sports, running full speed doing all

she can and still doing great---diagnosed at 8 days of age at LeBonheur

Childrens Medical Center in Memphis, Tennessee, now seeing Doctor Lyrene (and

other

wonderful folks of course) at UAB Children's Hospital

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Please keep us posted on the clinical trial. This is very exciting

and I would really like to know your thoughts along the way. Yeah

!!! Our children and grandchildren thank her!

Gale

>

> Thank you so much. Apparently your prayers (and others as well)

worked. We

> are back home as of 7 p.m. tonight. We had an excellent clinic

visit. PFT's

> were 70-80 range, which is her norm now. She hadn't gained any

weight

> (boohoohoo) but has grown a little over 2 inches taller in the last

3 months. Oh

> well, I guess maintaining weight and growing taller is okay.

Anyway, the exciting

> news... is going back in December after her 12th birthday,

to be

> evaluated for GENE THERAPY. We are so excited. The lady we talked

to,

> Eubanks, said you have to have mild CF and as of right now,

qualifies

> for having only a mild case. That sounds so much better than

the " a little

> worse than mild " we heard about 6 months ago. Anyway, we really

want to be a part

> of this study. Hopefully this will lead to a cure. Plus,

is excited

> about them paying her to come to the doctor. The study will do all

of us

> good in the future, plus will be followed very closely by

Dr. Clancy who

> is a pro at CF care and that will be very good for her I think.

> Anyway, thanks again for your kind words. Once again, we are

getting ready

> for another round of basketball season. is very excited

about playing

> again this year. I am looking forward to yelling for her.

> Talk to you again soon. Take care and have a great day.

>

> Sue Pettit

> mom to (16 wocf) driving and being the most responsible 16

yo I have

> ever seen, (13 wocf) playing football, band, and whatever

else he can

> get into, and (11 wcf) into all sports, running full speed

doing all

> she can and still doing great---diagnosed at 8 days of age at

LeBonheur

> Childrens Medical Center in Memphis, Tennessee, now seeing Doctor

Lyrene (and other

> wonderful folks of course) at UAB Children's Hospital

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